A Doctor's Response

by F. Keith Busse, Jr., MD, Pediatric Ophthalmologist

The late, great Carl Sagan once wrote that science is self-correcting. Therefore,
to any parent with any faith in medicine and their physician, please pursue
a second opinion regarding the diagnosis of your child, especially when it
might mean a diagnosis that represents a life of little or no vision for your
child. No doctor, even the best, will be right all the time. Respect those
doctors that are the most humble and admit what they don't know. There is so
little that we really know in medicine, and many concepts are overturned in
time.

Regarding the specifics of the original diagnosis, I know myself I once told
a mom her child was too young (a few months old and former premie) for me to
be sure the baby's optic nerves were hypoplastic and to return for an additional
visit later when the baby was older. Therefore, the simple act of allowing
the specialist to examine and re-examine your baby over time will be helpful
in obtaining an accurate diagnosis.

Medicine is also an art, and it is probably this particular aspect that I
love about it the best. Just as there are many artists, we don't always like
the art that each and everyone of them produces. The particular combination
of great, knowledgeable scientist plus compassionate and empathetic doctor
is rarer still, as I am sure you can imagine. The most knowledgeable Ophthalmology
professor I ever had, once, reduced me to tears because of his lack of compassion
and empathy for me, the student-doctor.

There are "some" Ophthalmologists capable of setting down with a
parent and presenting a rationale, scientific and compassionate explanation
of their child's vision compromising disease and an optimistic but realistic
outlook on the future. And the parent of the previous letter found one after
seeking him out. (See Winter 1997 See/Hear, p. 2-4, "A Letter to a Doctor.")

My own approach is to pretend that the office schedule is stopped and not
to allow any disruptions to interfere with this important act of communication,
between me, as doctor, and the parents, as caretakers of their child. I approach
it with seriousness, as if I were telling someone they had cancer. Not that
blindness or visual impairment is the same, but it will affect/effect this
family and this child with a similar level of seriousness for the rest of their'
lives.

Because of the seriousness of such an undertaking, I want a definite diagnose
before I start down this road. However, I try never to forget the parents'
desperate need for answers and supply them with the knowledge of what we know
and what we don't know. I prefer to be a conduit for information and only rarely
cross the line with my personal opinion (and only then when the very life of
the child may be affected like in retinoblastoma, etc.). It is one of the great
privileges a doctor has, to make such a big influence and share information
on such an important topic. However late I get in my patient schedule, I do
not allow myself to be rushed. I do my best to explain very scientific concepts
in as simple terms as possible.

Additionally, Ophthalmologists will not have all the answers. Even though
we devote a life to working with the blind and visually impaired, we have never
walked a day in these person's shoes. Nor have we spent a single minute educating
a child to learn with these problems. Moreover, we generally avoid the financial
or social implications of these problems.

Thank goodness for the many resources as mentioned by the parent of the previous
article. I pity the children with asthma, cancer or heart defects, as they
have no

Commission for their disease-specific or organ-specific ailments. We are incredibly
lucky that people and governments since time immemorial have recognized the
unique difficulties of those with blindness and visual impairment. For Texans
in particular, we are blessed with the wonderful resources of the Texas Department
of Assistive and Rehabilitative Services (formerly known as Texas Commision
for the Blind) and Visually Impaired and the Texas School for the Blind and
Visually Impaired. Such organizations are able to expand upon the contributions
(of the diagnosis and treatment of eye diseases) that we as doctors make to
enable the full development of the children who are our patients. The current
trend by our society toward early childhood intervention, therapy in vision
and mobility, etc. help give our patients, and your children the many expanded
horizons that they deserve as God's creations.